 Coming up on this edition of Abledon On Air. Brain injury, what is it? And what is neuroscience? We talk with the Brain Injury Alliance of Vermont. All that and much more when Abledon On Air starts right now. Major sponsors for Abledon On Air include Washington County Metal Health, where hope and support comes together. Media sponsors for Abledon On Air include Park Chester Times, Muslim Community Report, WWW, this is the Bronx.Info, Associated Press Media Additors, New York Parrot Online Newspaper, U.S. Press Corps Domestic and International, Anchor FM and Spotify. Partners for Abledon On Air include the HOD of New York and New England, where everyone belongs, the Orthodox Union, the Division for the Blind and Visually Impaired of Vermont, the Vermont Association for the Blind and Visually Impaired, Center Vermont Habitat for Humanity, Montefiore Medical Center of the Bronx, Rose of Kennedy Center of Bronx, New York, Albert Einstein College of Medicine of the Bronx. Abledon On Air has been seen in the following publications. Park Chester Times, WWW, this is the Bronx.com, New York Parrot Online Newspaper, Muslim Community Report, www.h.com and the Montpelier Bridge. Abledon On Air is part of the following organizations. The National Academy of Television, Arts and Sciences, Boston, New England Chapter and the Society of Professional Journalists. Welcome to this edition of Abledon On Air, the one and only program that focuses on the needs, concerns and achievements of the differently abled. I've always been your host, Lauren Seiler. We focus on abilities, not disabilities. With me today to discuss the Brain Injury Alliance of Vermont is Ashley McCormick, Neural Resource Facilitator of the Brain Injury Alliance of Vermont. Welcome to Abledon On Air. What is the missions and goals of the Brain Injury Alliance of Vermont? So our vision and our mission is to make Vermont a place where brain injury survivors can live and take your time. Sorry. I'm trying to memorize our statement on the, OK. Our vision and mission is to make Vermont a place where brain injuries are not only supported and prevented, but also people who already have them to have them have services and supports to meet their needs and their goals. OK, what are the services that you, obviously today we're here talking about neuroscience, but what are the services that you guys provide? Yeah, so we have a few services and things that we provide. We originally started as just a helpline. So we have a helpline that's Monday through Friday and people can call and get information about brain injury services, supports, referrals. And we also have webinars, support groups, a financial assistance program, and our neural resource facilitation program, which is similar to options counseling and helps individuals with brain injuries and their families and supporters find resources and supports to meet their goals and their needs. So is neuroscience a new field, yes or no? I would say newer because it's in the grand field of medicine. It is a little bit more new than some other fields. But I would say that it's definitely more emerging now that we are having more ways to do brain imaging, more ways to look at neurotransmitters, and more ways to really look at the brain as a whole and a holistic view. So yeah, it's definitely emerging. So myself being a survivor of brain injury, what is the difference between things like traumatic brain injury, epilepsy, cerebral palsy, so on and so forth? Can you kind of break down? Didn't mean to be so technical, but can you break down the situation? Yeah, so our organization and a lot of other places in the United States have started to kind of shift from just looking at brain injuries as traumatic. So in history and textbooks, we're seeing TBI, TBI, TBI, traumatic brain injury. Now we are looking at things from a TBI and a non-TBI lens. So we have TBI's, which are direct blows to the head. So that's your typical brain injury of you get hit in the head with an object. That could be a TBI. Whereas a non-traumatic brain injury is a brain injury caused by other forces, other bodily functions, other things. So we would put seizures, epilepsy, MS, Alzheimer's, dementia. We would put those things as non-traumatic because they were not a direct blow to the head, but they are something that has caused a brain injury. So I'm just going to, because we'll put this in editing. It says, moderate to severe traumatic brain injury. The injury that affects how the brain works, it may cause, maybe caused by a bump, a jilt in the head, penetrating injuries, such as a gunshot, et cetera. So are you a doctor? You're not a doctor. But can you explain, like, is brain injury caused? So it's like electrical impulses. And if a brain injury is caused, what actually happens? So a brain injury is often, if it's caused, no matter what the cause is, traumatic brain injury, so a blow to the head or you were born with something. Like cerebral palsy. Yeah, a brain injury can affect different lobes in areas of the brain. So the brain is comprised of different lobes, and each one does a different thing. So no matter, depending on where your brain injury is affecting, what lobe it's affecting, it can affect different things that come out externally. So for example, if someone, their frontal lobe, which is responsible for making decisions and thinking and reasoning, if that's affected, someone can be really impulsive. They can make bad decisions. And it really can be from direct damage to their frontal lobe. OK, so now that we said all of that, so you offer counseling in neuroscience. We don't offer counseling, we don't offer specific counseling, but we do offer referrals and assistance and options. So options counseling is kind of like that. Our program is kind of in between options counseling and case management. So we work directly with the survivor and or their family members, or sometimes their medical providers, to see what they really need, what their goals are, and what organizations in Vermont can we connect them with to help them meet those goals. OK, so what type of assistance do you offer? You mentioned off-camera some other assistance. Go ahead. Yeah, so we mostly do a lot of advocacy work. So education, advocacy, consults with other medical providers to kind of advocate for the survivor and say, you know, this is something that is directly affecting their brain. So whatever behaviors they have, it's not their fault. They had a brain injury. And so we do a lot of advocacy work because there's a lot of misconceptions about brain injuries and a lot of negative stigma around a brain injury. What is some of the negative stigma? Since we said that. Why do people stigmatize people with brain injuries? Yeah, I don't know where it comes from. But I do see in the field of mental health, of medical services, that oftentimes people with brain injuries are labeled as difficult. And they're labeled as. Labeled as difficult? Yeah, difficult or lazy. They don't do. They don't accomplish tasks that are given to them. They can be labeled as. I mean, a lot of people with brain injuries or shoes or outbursts. I'm going to say this. But sometimes if someone was to put themselves into someone else's shoes, then they would see how to help them. Since they don't know, see, that's the thing. People don't know enough about people with disabilities or go ahead. Yeah, I mean, if you want to say something. No, totally agree with you. And oftentimes we live in such a structured system. So social security, the medical system, the mental health system, the housing system, we live in a world where there's so much structure. And there's so much you have to do this to get this. You have to complete this packet to get this. And someone with a brain injury, sometimes, oftentimes, they struggle with executive functioning. They struggle with follow-through. They struggle with paperwork. And organizations. So a lot of these agencies are just not structured in a way to actually help a survivor complete these tasks. Now, the Secretary said that, social security, government. There's a lot of other governmental organizations are bureaucratic. Nine times I'll attend a lot of people with brain injury received social security. My next question is, is brain injury listed as a sort of a pausing? But is certain brain injuries listed on for people to get social security? Or is it because some disabilities are assignment? Go ahead. Is there a way around that if you're helping somebody with services? I hope that wasn't a backwards. No, no, it's not. No, I would say oftentimes it comes up to their documentation. So often it's the medical providers they've worked with, whatever diagnoses that their medical providers have given them, whatever documentation they have from the past, that really shapes the social security application, is my knowledge. Because I do know people who have gotten denied. And oftentimes. You get denied being brain injured? Yeah, oftentimes they get denied because maybe their documentation wasn't all there. Or a lot of the times actually people are told, survivors are directly told, there's a good chance you're going to get denied on your first try. So you have to try again. And I don't even think that's only for brain injury. I think that's for a lot of disabilities actually, is that on the first try, sometimes they do get denied, which is a very unfortunate reality. Let's go back to this. What are some of the misconceptions around brain injury when people first meet people? Yeah, so I would say a brain injury is a little bit more complex than a lot of other injuries and disabilities. So a common saying in the field is when you've seen one brain injury, you've seen one brain injury. What that means is that you see a line of people, a support group, an agency where there's a lot of survivors, each one of those survivors is going to be very different in the way their injury happened, what got affected in their brain, and what... I'm going to say this, people are not cars. One car doesn't have everything. It's not one size fit all. But in terms of people, not everybody needs every single service, but when you need it, it's there. Yeah. And not every brain injury is the same. Yeah, exactly, exactly. So I would say the biggest misconception is people, and a lot of times this is providers, like medical, mental health case managers, a lot of times people will group them together. They'll say, oh, in their mind, they'll think, oh, I've worked with a brain injury survivor before, and they had really difficult behaviors. So they're going to stigmatize other survivors because they think that all these other survivors are also going to be super difficult. So that's probably the biggest. Why do they label people that are super difficult? Why is there a reason for that? I don't know. My view is, and what we've talked about in our organization often, is that the people who are labeled as difficult are typically the ones that are pushing back against that system. So the people that are questioning the system and saying, this doesn't make any sense. Why are we doing it this way? Because they're pushing on that system that is so structured and has been in our country and in the state for so long, they're labeled as difficult and are often written off or taken off services or tried to push them onto other services to get them off their backs. That's our view that we see often. Do you think Vermont can do, do you think Vermont provides adequate services for people who are brain injured or do you think we can provide more? We can provide more. Yeah. Also. Yeah, I would say our agency. We're getting to a point. Go ahead. I think we need to be providing more. We went to a conference, myself and my coworkers went to a conference where we talked with a bunch of brain injury alliances and associations in the whole country. So people from Colorado, Alaska, we went to this conference and we're talking about all of these services that these people have, these states have. Colorado is a very robust brain injury state so they have so many services. They just opened a like 92 apartment building just for brain injury survivors where the low lights are dim, that the noise isn't super loud, the wall colors, the fixtures, everything is structured for a brain injury survivor to feel comfortable and safe. And we have nothing like that in Vermont. I mean, we have apartment buildings. I mean, we have housing and we have certain buildings are elderly and for elderly and disabled, but not, you know, so since you said that, what needs to change, number one? And when it comes to services like housing, get them a brain injury, what would you like to see? So what needs to change? That's a huge question. I'm trying to think of how... They all come down to money problems. Yeah, yeah, yeah. So there is just not enough money trickling down to services that we can give brain injury survivors actual concrete services, really. We have a few waiver programs in the state, Choices for Care, the brain injury program that I can definitely talk about, but even those programs have wait lists and there's no telling if someone will guess. However, if it's an emergency, however, if it's an emergency, you can push first off. Yes, exactly, exactly. And if it's... Why does it have to come down to being an emergency? I don't mean to put it out there, but... Yeah, yeah, no, and you're right. And that's our system of care. Is that so which if you are not in deep poverty or you are not experiencing a medical emergency and you're in that middle ground of struggling so hard but you're not at that level, you're likely not gonna get any help or you're not gonna get the help you need. So that's where we as an organization are trying to fill that gap of how can we help the people in the middle so that they don't fall down and they don't fall through the cracks? So that's a huge thing. We need more services for those people who we just, we want to stabilize. We wanna help stabilize. We wanna help them help themselves. We just don't have enough of that in our state. I would love to see specific targeted case management for brain injury survivors. Explain what that is. So that would be targeted case management for brain injury survivors and they don't have to be on a waiver program. So to be on a waiver program, you need to be very poor. You need to qualify for certain Medicaid and other things. And I would love to, we as an organization would love to see brain injury case management for people and we don't look at finances. So you can have any amount of resources, any amount of money, you can be on any, you know, anywhere in the system of care and you can access case management because that's a huge need for survivors. How has media, how has the media passed present in the future? How has the media dealt with brain injuries? Go ahead. The media, in the past, I would say brain injury survivors were often lumped together into, like you don't have a brain injury at all or you have a severe TBI where you are extremely debilitated and you have all of these things you struggle with. I think now we are seeing in TV shows, movies in- It's gotten better, but- It's gotten better. Yeah, it has- Still needs to- Yeah, it's gotten better because I think now we're looking at, okay, something like a mild concussion which someone might downplay and they may say, oh, I just have a concussion. That is now looked at as, no, you had a brain injury and something serious happened to your brain. I think what we can do better in the future is possibly displaying more of a range of symptoms. I think in the media it's often focused on anger because that's just, you know, the media loves drama so they wanna focus on an anger problem. Whereas I think in the future we can look at, okay, let's actually look at how someone struggles in their day-to-day with organization and functional skills. Okay, words such as feeble, feeble-minded, chronically ill, different things like that. Were there any specific words describing people with brain injury going way back and how has stigma changed? Because certain words were not even, we're not even, and I'm gonna say it on this, we're not even supposed to use the R word. Yeah. We're not supposed to use the word retarded because when President Obama and a family, somebody by the name of Rosa, back in his administration, Rosa's law, specifically stopped the word retarded, the R word. How has stigma changed, you know, from institutionalizing on down? Yeah, so I would say, we talked about this before too, that it's institutionalizing, I think that is probably the biggest change I think. We have, you know, years ago people with severe brain injuries were likely put into an institution and likely deemed unsafe to be out in the community. Now, with all these waiver programs. Because they're afraid people with my phone? Yeah, or maybe they had, again, difficult behaviors that other people didn't wanna deal with. Or safety reasons too, they maybe were afraid that they just couldn't function in the community. So now, I think the biggest change now in 2024 is these waiver programs really allow, I mean, we have the Disabilities Services Program too, they really allow people with brain injuries and other disabilities to be in the community, have jobs. I mean, higher ability is a huge program, I'm sure you've heard of and they're awesome. You know, have jobs, vocational rehab, community college. And so- Four year colleges. Four year colleges, yeah, yeah. So in every step of the way, in every system, I think we're seeing more people with neurodevelopmental, neurodevelopmental disorders and diagnoses and brain injuries and, you know, all across the spectrum, because we know it is a spectrum of neurodevelopmental and neurology and we see people really doing well and exceeding expectations that their doctors may have told them. Since you said that, America's with Disabilities Act, specifically states. I know I'm kind of jumping here, but it's important. Education, if someone wants to go to college, they can help through their disability services office. Any specific services that colleges or schools offer students with brain injuries that people might not know about? Yeah, I'm not sure, actually. I'm not positive. I do think that higher education is trying to be better with that because I feel like in the past, higher education has kind of not been very accommodating to people with different brains, really. And I think just, you know, they, because of brain injury, oftentimes is not physical. So if someone has a brain injury. Silent. Yes, one client once told me, and this has stuck with me for a while, that they felt like they had an invisible wheelchair. So their brain injury, you know, someone on the street walking by them may not see that they had a brain injury. So in our systems and higher education being one of them, oftentimes people have been told, you know, I think you're lying. Do you actually have a brain injury? I've heard that before. A client tell me, you know, I've been asked, do you actually have a brain injury? And so I assume that's happening in all levels, in even college, higher education, yeah. Mm-hmm. What is the life expectancy of, is there any specific life to, you know what I mean? People live 100, 106. What is the life expectancy of someone with a brain injury? I'm not sure, honestly. And I actually don't even know, I'm sure data exists out there in the world. But I assume that it's hard to pinpoint that data or it's hard to measure that because every single brain injury is so different. Whereas I feel, yeah, so the answer, my answer is I'm not sure, but I'm sure there have been studies out there. I just don't, I don't, yeah, I don't know. Okay, let's talk about, sorry. No, it's okay. What are some of the things that you guys do with the brain injury alliance? In terms of your webinars, your education, go ahead. Yeah, so we do Wednesday webinars. So every other Wednesday, we do free webinars that anyone can go on our website and sign up for. We recently had one on how to survive the holidays with a brain injury and that was awesome. Yeah, because. What was that about? Yeah, so that was mostly about how can we set boundaries as a survivor or as a family member of a survivor because holidays often you have, you're interacting with people you haven't seen in a while and if you have a brain injury or any other condition, I feel as often times people put you in a box and even relatives can say to you, oh, are you doing better? Are you doing worse? They can ask these probing questions and so that talk was really on how can we set boundaries for ourselves so that we won't feel crappy at the end of the holidays. What do you mean by being put in a box? So often survivors are, like I said earlier, put into that box of, oh, they're a brain injury survivor. They must struggle. They must struggle with things and we at the Brain Injury Alliance really don't see it that way. We, similar to your philosophy of seeing, how is somebody able to do something? Not how is someone disabled? So that's kind of like when I think of being put in a box, that's what I see for our survivors often. Yeah. What are some tips that you can, okay, so now let's get back to neuroscience. Explain more about neuroscience and how your agency helps with that. Yeah, so I'm not a medical professional so I won't pretend that I know a ton. I do have a biology degree, so I know a little bit, but not, but the field of neuroscience is really the study of the brain and neurotransmitters and electrical impulses and how does our brain work really? And how does it work and how does it? It works differently for a lot of people. Yes, exactly. So now with this rise of neurodiversity, I think that's a huge emerging field of neurodiversity and with that and then just new ways of looking at the brain, looking at brain function, how brain function impacts physical functioning, brain-body connection. So those are some emerging fields and I think that are becoming more popular in the media, the brain-body connection specifically and neurodiversity and our organization really works with clients with any type of brain. People come to us and they'll say, oh, I have MS, but I won't qualify for this service or I make too much money to qualify for this service. We will take them on our services because they have nowhere else to go and what that means often is advocating for them if they have a problem. Can you teach somebody how to advocate for themselves? Typically, no. We typically will refer people to the Vermont Center for Independent Living. They have a peer advocacy program maybe you've heard about and those are specifically people who work one-on-one with somebody with a brain injury or any type of anything going on and work with them to figure out how to advocate for yourself. So we refer people to that program very often. What makes people scared, if I'm saying it right, if a person has a brain injury, they're afraid to go out and do stuff. Sometimes they're sheltered or sometimes, oftentimes they might have PTSD or something else stopping them from doing something. What makes people so scared of their brain injury is it because they don't know enough about it, about themselves, go ahead. Yeah, often, so I myself and my co-worker, Beth, we run a support group for brain injury survivors and I have learned the most about brain injuries in that group because when someone says, how do you learn about brain injuries, I'm a firm believer you learn from the people who are experiencing it. And so from that group, I've learned that one of the biggest struggles is seeing themselves after their injury, realizing who they are now. What are my struggles? What do I wanna do in life? What is my purpose? A lot of people lose their purpose after an injury because in America, we tie purpose to jobs often. So someone was a firefighter and then they got a brain injury and they no longer can do that. They may become very depressed because they lost their purpose. And so we see that very often with survivors. You're saying losing purpose. Is there a lot of depression with people who have a brain injury? Yes, so a brain injury, and there is a lot of research on this, often brain injury survivors experience increase of symptoms of anxiety, depression, substance use, those are the three big ones and I'm sure there are others, but so often times people who have had a brain injury will go on to receive mental health treatment at some point in their lives. Yes, this is right here. Depression and traumatic brain injury. This comes from, there's a website, those that wanna find out more about it. There's another website here, wwwmsktc.org forward slash TBI. It's about science and brain injury. So here it says, depression is a feeling of sadness, I'm just giving information. Sadness and despair of hopelessness and does not get better over time. Sometimes it can be overwhelming enough to interfere with daily life and it can cause a concern when feeling depressed and losing interest. Usually activities such as feeling down, such as things like feeling down, blue sad and hopeless, loss of interest, pleasure, usual activities, changes in sleep, appetite, withdrawing from others, difficulty concentrating, tiredness or lack of energy, moving and speaking slowly and fidgety, thoughts of death or suicide. And it says here, how common is depression and TBI. Depression is a common problem with TBI. Almost half of people with TBI are affected by depression within the first year after injury. Even more nearly two thirds of people affected within seven years after the injury in the general population. The rate of depression is much lower, affecting fewer than one person, into fewer than one in 10 and over a one year period. More than half of people with TBI who are depressed also have significant anxiety. So I'm just bringing, there's a whole website, that there's lots of information out there. Yes, yes, totally, yeah. That's something I see. Being with your agency, how big is the counseling that you provide? Is it in person? Is it telehealth? Because I remember during the pandemic. Yeah, so we, our options, or it's our neural resource facilitation program is kind of a mouthful. We call it our NERF program. NERF. NERF, yeah. We often call it that. That is typically, it can be either. We really, something that we try really hard as an agency to do is to ask people, what is your preference? Do you, are you good with technology? Are you not that great with technology? Are you, do you like phone calls? Do you like email? Because we're trying to be as accommodating as possible because we know from listening to these people's stories that a lot of agencies are not accommodating. So oftentimes, a lot of agencies are not accommodating to people that have different needs. And especially now in a time of a huge technology revolution and really high tech things, people are falling behind because they feel like I can't learn technology. And that's all someone will offer. That's all this provider will offer me is a virtual appointment. So we ask all these questions. What do you prefer? What do you, what works for you? What doesn't work for you? And we kind of go from there and see what each individual person likes. Not all counseling is the same, right? Yes, yeah, exactly. Not every single person we work with may be the frequency of check-in calls may be different. The frequency of emails may be different really based on that person's needs and wants and what they do best with. Is there a lot of mental health issues with people with brain injury? Why, why not? Yes, of course. As I say, I don't mean to put this out there. Please forgive me if I said it wrong. Please correct me. Oh, no, yeah. Episodes? Yeah, so I would say like- We don't want to get in trouble here and be politically incorrect. Yeah, yeah, yeah, totally. I would say mental health struggles are very common with brain injury survivors. We're closely, closely tied with the feeling of loss of purpose and hopelessness. I mean, those are the things I hear over and over again in support groups. Oftentimes, feeling like no one else understands them. Their family members don't understand them anymore. They don't, sometimes when someone has a brain injury they have personality changes because one of the frontal lobe was affected. So their personality may be slightly orange. Do they yell? Do they scream? What are some of the episodes that people might go? Yeah, often, I mean, anger is a common one, but that's also, I personally think that that is a little bit of a stereotype that brain injury survivors all have anger problems. The people that I work with, the clients I work with I would say I don't see that trend, but often in the media, in social media, we see that stereotype exist. So yeah, I would say often it's really periods of hopelessness. Can you describe in this case a more stereotype? What would that be in terms of like, because we wanna break the mold. Yeah, yeah. So a stereotype that I see often is that someone with a brain injury has anger issues or anger outbursts or they raise their voice often. And when I talk to the individuals that are accused of this, I don't see it that way. My coworkers do not see it that way. We see it as they are being forced to interact with the system that is not accommodating them. So of course they're going to raise their voice. Of course they're going to advocate for themselves, which may look like getting angry, but really they're frustrated. They're super frustrated with the system. They're frustrated with how they've been dealt with. They're frustrated with how they haven't been listened to. So we rarely encounter people having outbursts over the phone with us because we're listening and we're telling them that we care and that we're showing them that we care. A lot of agencies can't do that with the volume of people that are calling them or staffing issues or just structural issues. They can't do that. Well, last question, because I want to do kind of a commentary here because I am a brain injury survivor, but what are the future goals of Brain Injury Alliance? Yeah, so we have a lot of future goals. So we are really hoping to become a case management agency. So we're really hoping to case manage people with brain injuries so that they can really have knowledgeable case managers. Often in the field we're seeing people who don't have much experience with survivors. They don't have much education about what a brain injury survivor goes through and what changes they have maybe have had. So we're hoping to become a targeted case management agency. Also still offer the things we offer now, but add case management so that we can really help people in the way that they need. Okay, well I'd like to thank you for joining me on Ableton on Air. For more information on the Brain Injury Alliance of Vermont, you can go to www.BIAVT.org. That is www.BIAVT.org, the Brain Injury Alliance of Vermont. I'm a brain injury survivor myself. I've dealt with cerebral palsy and epilepsy. It's not easy having a brain injury, but let me tell you, we should not be prideful when asking for help. We should ask for help when people want to come to us to give help. What I mean by prideful. Many oftentimes people say they can't do it because they're disabled, but there are people that we all need to attempt to survive here. People like us, we are married, we have apartments, we have a life. We just need to have more groups such as the Brain Injury Alliance of Vermont to give us that assistance. I'm Lauren Seiler, see you next time on the next edition of Ableton on Air. Major sponsors for Ableton on Air include Washington County Metal Health, where hope and support come together. 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